Cleft Lip & Palate

Frances takes centre stage.

10 days old

There hardly seems to be anyone I know who hasn’t been through some awful experience with their child and I am fortunate enough now to be able to look at the last three years with the knowledge that it could have been worse and that while things have been hard, many people have it far worse.

A Bad Moment

It didn’t feel much like that though when, after a long labour and an eventual emergency c-section, the operating theatre went totally silent. I was exhausted, I saw the registrars look quickly at one another but I just closed my eyes and dozed. They told me I had a girl and whisked her from the room. I vaguely remember realizing that something wasn’t right. A few minutes later they called M (my husband) out of the room and when he returned with the midwife, who carried a small wrapped up bundle, he looked utterly shell-shocked, though that could have been witnessing the previous 15 hours.

“She’s got a little problem with her mouth. A cleft lip and palate. Do you want to look at her?” asked the midwife. Errr…well, yes, of course I do. They had covered her mouth with a blanket but I pulled it back and thought she looked beautiful. She had the most amazing eyes and somehow, her mouth seemed as if it should be the way it was, her lip separated by a gap of nearly an inch that extended up into her nose and gave her just one nostril, the other being stretched to the corner of her mouth. I know people who have screamed and sobbed at the sight of their cleft baby but not me. I felt as if I had known all along.

Premonitions and First Hours

In the week before Frances was born I began to obsess that the baby would have a birthmark on its face. In the early months of pregnancy I would catch sight of babies in prams and it would flash into my head “Why can’t I have one like that.” I never really felt secure that everything was okay. So it wasn’t a big surprise, though when the morphine and the anaesthetic wore off, I was certainly shocked and cried buckets for days, weeks, months… a year.

The worst thing about having a baby with a facial deformity is that, well meaning as it is, you get instantly bombarded with photos of babies who have been repaired and I tried to be positive but none of them looked that great to me. I’m a reader, I like to know exactly what I am dealing with. Folders full of literature came my way and instead of bonding with Fran, I sat and read about related syndromes (and panicked), breathing problems, dental surgery, endless surgery, speech problems, hearing difficulties, braces, bone implants, recurring clefts with future babies… (very rare but statistics are a bit unimpressive when your baby has just become the 1 in 700 with a cleft). No fun.

Our speech therapist arrived with squeezable bottles, rosti bottles (funny shovels to get milk into a baby who can’t suck) and lots of reassurance to get us through the first few days. My mum was earth-shatteringly brave, cried in the car park and fought the urge to send her daughter out of the room while she, the real grown up, got down to business with the professionals (dear old mum! I’m still her baby!) Midwives offered to look after Frances, I let them, forgot to express, grieved over not breastfeeding – and boy did we try – sobbed a bit more in private, wondered whether M who had gone home, exhausted, for a shower and food would actually come back (he did, of course, having got home and wondered why he had left!)

Instead of looking at Frances, I looked at other photos of other children; people tiptoed in and out and muttered about how calm I seemed (HA!), Frances screamed with hunger until daddy arrived and read her a Narnia story, I started to go quietly balmy. All I had ever wanted was a baby, but this was not what I had expected. On Bank Holiday Monday, her surgeon, Mr Hall arrived having heard about us by accident, left his family on his day off to visit and talk us through her first operation. I got my first real lesson in parenting from this man. I wanted her lip fixed before our wedding which was in six weeks and tried to be brave about him saying it was too wide a cleft to guarantee to fix well at that stage . He saw how upset I was and said “It’s what is best for Frances that is important now.” I will never forget that. However he decided to do a partial fix and actually did her complete lip at 10 days.

Getting on with it

We had 4 days at home between hospitals (Peterborough and Addenbrookes) which were frankly hell. She had jaundice because I didn’t realize that babies were supposed to drink more than 40mls of milk a day (!), she screamed incessantly (hunger?!) we ate burnt food, I cried, M coped, we had up to 14 visitors a day (ARGH! Why do people let this happen to them!), it was horrid. In very bad moments, I hoped we wouldn’t be bringing her back from the hospital. (I only write this in case someone is reading this in those mid few days. If you are thinking it, you are not a mad cruel heartless woman, you are in shock.)

Newly Stitched – 11 days old

Operation Number 1

We arrived at hospital on Monday for an operation on Wednesday. They took her into special care on the Tuesday night, I climbed into bed and prayed to wake up in three years time. At 6.30am they woke us up to say goodbye to her – she was already in the travelling incubator, screaming and I couldn’t give her a goodbye cuddle. It was possibly the worst moment of my life. We waited for hours; the message to say she was back got lost and for two hours I assumed she was dead and that no-one dared tell us. Eventually I plucked up the courage to ask, ran to the ward and couldn’t recognize my baby, who was 4 times the size of most of the others in Special Care and straight in front of me. She had been transformed into a baby with a proper face and even with her Tabitha Twitchitt whiskers, she was absolutely beautiful. It just shows you how much we adults milk pain – she had 2mls of Calpol 3 times a day for less than a week and came on in leaps and bounds. The most amazing thing was the absolute humility of her surgeon, who crept into the ward and asked us if we were sure we were happy with what he had done? Very!

One week later

More Operations

Operation Number 2 came at 9 months – I found it very hard – I was in the grip of postnatal depression but keeping it beautifully hidden, having nightmares every night and barely able to function. We had bonded – I thought she would die because the previous time I had almost wanted her to. We made it through; she was supposed to cried for 3 or 4 days but only cried for 3 or 4 hours and stopped once we fed her! By Operation Number 3 I had had counselling, I was pregnant again and this time it was M who found the long hours of waiting in the cafeteria incredibly hard. She was fine but didn’t react so well to the anaesthetic, got a temperature, had to go back on a drip and frightened the life out of me. Then, the night before we had hoped to leave the hospital, I got food poisoning, was sent to A&E for the night and started having contractions – which luckily stopped again! M busted us all out two days later having been treated like an incompetent moron by a nurse who thought daddy couldn’t look after his little girl without a thorough patronizing! These operations seemed much worse and involved blood oozing out of her mouth, weaning her off her dummy (YEH!) and soft food for three weeks. Boy, was she sick of Weetabix.

19 months – my angel

Living with a cleft

As you can see from her photos, Frances has been really lucky – she is beautiful. To be honest though, how she looks stopped being important fairly early on. Her hearing was awful so she had to have grommets, which work like magic, her speech was seriously delayed and is still difficult to understand. She is missing several sounds, including b, p, l, n, d, v and to a certain extent f. However, these are improving. Until her cleft palate was repaired in the 2nd and 3rd operation, she used to get things like chips stuck in the cleft and on one occasion we had to go to casualty to get a plastic clothing tag removed that she had put into her mouth and then twisted so the T top had wedged. I am eternally glad I was not there the time she put a coat hanger hook in her mouth and it came out her nose! Well done M for staying calm! She still has a gap in her gum that will not be repaired until all her adult teeth have come through and she has a tooth that grows through the roof of her mouth. But she is happy and growing in confidence and capability. I am determined to home educate her because I don’t want her to be bullied or become over aware of her difficulties until she is in control of them. I am so proud of her and of all of us for coping as well as we have with it.

The Pooh Bear Girl aged 3

Update 2003 ….

Fran is now nearly 5, the eldest of three girls (no other clefts) and faces her 5th operation in April. She is a wonderful, bright, laughing and beautiful girl. (She has off days too!) She knows about and understands her cleft, which she calls her gap and is able to field some of the questions people ask alone. She gets a little confused because people, not noticing her lip repair, assume she has lost a baby tooth and ask about it and she isn’t sure how to explain. But she is confident about asking us things she needs to know (why, how etc) and we have promised her surgeon will tell her more when she next sees him. Her hearing is currently a little down again but she copes well. Her speech is not perfect and still has some sounds missing, but mainly on old, long ago learned words, but she is perfectly intelligible. She loves to skate,dress up, socialize, read… and all my fears and anxieties have so far proved groundless – so either we did an amazing job or it really wasn’t such a big hill to climb after all. And as you can see below – she is still totally beautiful.

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